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Jessica’s Coping with Lupus Corner

Dealing with Lupus Fog

Jessica Rowshandel, M.S.W.
Jessica, Rowshandel, M.S.W.
Director of Social Services
S.L.E. Lupus Foundation

Dear Jessica,

I feel a huge sense of loss because of lupus “brain fog.” I feel that the fog is getting worse and I am finding it hard to hide this around my friends and family. Do you have any suggestions?

–K.P.


Dear K.P.,

Many patients have told me about their experiences with what they, like you, call “brain fog.” They say they have trouble remembering things and can’t think as clearly as they used to. It can be very alarming when this happens.

Loss can be felt on many levels, from the practical loss of memory and the ability to think clearly to the general loss of what makes you uniquely you—your identity. People tell me all the time about the things they haven’t been able to do anymore because of lupus. Many have had to come to terms with these losses by redefining themselves and finding a “new normal.”

Doing this takes time. It’s a process that involves coming to terms with the way you now think and remember. This loss can be very difficult, but it does not mean you are defeated.

Meanwhile, there are practical things you can do to help your memory and fight back against “lupus fog”:

  • Make “To Do” lists to keep track of your tasks. People say, and I agree, that it feels so good to cross things off the list, so not only will it help you remember, but you could feel a great sense of accomplishment.
  • Use a calendar to remind you of appointments; electronic calendars can even be set to send you reminders.
  • Use alarms to help you remember tasks and appointments. Many cell phones have a built-in scheduler with an alarm.
  • Use a Days-of-the-Week pill box or other type of pill organizer to monitor when to take medication. Some even come with alarms.
  • Keep belongings in obvious places, and always in the same place. For example, always place your keys on a hook near the door, or your cell phone charger in your purse. It’s a comfort to know where things are!
  • Declutter. Being organized will help you find things. And letting go of unnecessary items can feel surprisingly liberating.
  • Label drawers, cabinets and shelves if you need help remembering how you organized your things.
  • Stock up on Post-It notes and place them strategically, where you’ll actually see them! Do you have to remember to pick up paper towel tomorrow? Write it on a Post-It and stick it on your front door. You’ll see it on your way out.
  • Keep a pen and pad on you at all times – in your pocket or purse. If you are out and about and happen to spontaneously remember something or are told something important that you don’t want to forget, you have a way to make sure you remember the information later.
  • Leave yourself voice messages on your cell phone or voice mail.
  • Keep a little digital camera in your purse to take pics and remind you of places you’ve been and things you’ve done. Cell phone cameras work for this too. Download and organize every month or so, to jog your memory and keep track of where you’ve been and what you’ve done…

If you are in the middle of a fog and are feeling frustrated or upset, don’t forget to pause and breathe. Remember that these challenges do not define you or your intelligence. You will get through the moment.

Take a pause, keep a diary

In the same way it’s helpful to declutter your home, it’s helpful to declutter your mind.

Try deep breathing and meditation, both of which can help relax your body and release tension as well as clear your mind. Try to let go of frustrations, worries, pressures, and unhelpful thoughts hanging out in there. In addition to instructional DVDs, “deep breathing” machines for high blood pressure can help guide you to slow your breathing, and “guided” meditation can be learned online and through CDs and MP3s. Your local library likely has options.

Many people find it helpful to keep a diary of when these fogs occur, how long they last, and what you were doing at the time they happened. You can also keep track of strategies you used to work through the fog and reflect on which worked and which did not work.

Time to take another step

If you feel that the “lupus fog” is progressing, you might feel very scared. Please be sure to talk with your rheumatologist about what you are experiencing—whether the lupus fog is getting worse or not, in fact. The doctor might send you to a neurologist for further testing.

Remember to bring your “fog” diary with you so you can show the doctor very detailed information about how your thinking and memory is being affected. You are your best advocate!

Do you have any tips to share on how to deal with lupus fog? Please comment below.

And for more information on how lupus can affect thinking, memory and behavior, check out this article on Lupus: Thinking, Memory and Behavior and Can Lupus Affect My Brain?


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Disclaimer: This website and its contents are designed for educational purposes only. Jessica Rowshandel, MSW is the S.L.E. Lupus Foundation’s Director of Social Services. She is not a physician. The advice provided is for educational and informational purposes and the Foundation does not recommend or endorse any particular treatment or therapy. The information provided here should not be used for the purposes of diagnosing or treating a medical or psychiatric illness. It is not intended to be a substitute for professional care. Lupus is a very individualized illness; consult a healthcare professional before making any decisions about your care. If you have or suspect you may have a health problem, you should consult your health care provider. Telephone calls, emails, and online content do not constitute counseling services in any way. The S.L.E. Lupus Foundation does not provide any medical or psychological services to its patients and users. For an accurate medical or mental health evaluation, participants should seek an evaluation from a qualified healthcare professional. S.L.E. Lupus Foundation employees, consultants, and agents shall not be liable for any claims or damages, and expressly disclaim all liability of any nature for any action or non-action taken as a result of the information generated by the S.L.E. Lupus Foundation programs and its website, as well as the S.L.E. Lupus Foundation Facebook and Twitter pages.

Comments

 @Linda,   I am sorry that

 @Linda,

 

I am sorry that you are having trouble getting a diagnosis. I am going to send you a private email.

 

Warmly,

Jessica

lupus

hi my name is linda l have had 2 posivitive results for lupus last year, then l got sent to the corrective tissue desease clinic at my local hospital for treatment of this illness. the lady doctor l seen was rude to me and basically made light of all of my sympoms, she asked me if l had always been over weight which l havent just in the last few years, l also suffer from ostoarthritis when l went to see this doctor see was more interested in my knees then l told her that l needed 2 knee replacements thats why l walked funny told her l also had crumbling spine and hip joint she told me that was to be expected since l was nearly 50, she then asked me if l would like to go to the orthopadic clinic l said yes she couldnt wait to get rid of me got sent to the other clinic got seen by head surgeon whom she had asked to see my left knee, l told him that nothing from the waist down works he laughed and said your kiding me l said no he then sent me for xrays of my lower half, got the results same day, he then told me that l needed both hips and both knees replaced he then told me that they would replace my left hip first then left knee then same again on the other side, i got my left hip replaceed in febuary of this year. i have been back at the other clinic to see her again and she will not say l have lupus as lupus is for life she will treat my symptoms as they progress, also have rynaids was borderline for siorgens every symptom l say l have she tells me it is not anything to do with lupus my symptoms are burning legs swollen fingers and numb fingers all over hairloss, weight gain, skin ulcers of the upper arm , underarm and under breast excesive sweating bad chest infections, and rash on face that comes and goes memory problems and just feeling so tired but cannot sleep, l am wore out with this and feel that no one is listening to me can you help me please yours linda morton

@Robyn, I do have some

@Robyn,

I do have some information about working and disability. It would be best if we spoke or emailed directly. Please call or email me: 212-685-4118, ext 32 or jrowshandel@lupusny.org

 

Warmly,

Jessica

@Sonia, If you would like to

@Sonia,

If you would like to chat about these experiences, please call me at 212-685-4118, ext 32 or email me at jrowshandel@lupusny.org

 

Warmly,

Jessica

I was diagnosed with LUPUS

I was diagnosed with LUPUS (SKIN) and Fibromyalgia a yr ago and I am on so much medication and vitamins. I'm currently still working and the pain and FIBRO/LUPUS fogs are getting so bad I almost forget something daily I like to call them the HANGOVER. I was wondering if you know any of the long term or permanent disability laws? anything suggestions would be great.

I HAVE BEEN ON PLAQUENIL FOR

I HAVE BEEN ON PLAQUENIL FOR THE LAST 10 MONTHS ALONG WITH ALEVE IT HELP THE BODY PAINE. THE MEMORY LOSE, IT GETTING WORST. FEEL TIRED ALL THE TIME.

@Anonymous - thank you for

@Anonymous - thank you for reaching out. Since you are newly diagnosed, it might be a good idea to get involved with a local support group. Where are you located? I can help you find one, if you are interested. Support groups are great for learning how to "deal."

 

Warmly,

Jessica

@Kris - My apologies that I

@Nancy, @Kris and @Teri - My apologies that I can't answer your questions as I am not a medical professional. These would be great questions for your doctors.

Warmly,

Jessica

I have recently been

I have recently been diagnosed with Lupus. So new, that I haven't seen the rheumotologist yet! I'm really scared because I have so many things going on that relate to Lupus. My memory is shot! I cannot remember anything anymore. I stay tired constantly. I could sleep 24/7 if possible. The last year, I have been having recurrent UTI's, which I have read has a connection with Lupus. I have been on depression meds for over a year, but they don't seem to work! Before I was diagnosed with Lupus, I was diagnosed with neuropathy, which in itself is painful. I have severe back pain, not sure if it's realted to Lupus or because I have DDD. My neck hurts all the time, my body just aches! If someone out there knows how to "DEAL" with Lupus, please let me know!!!

UTI's and IGA Kidney Disease

I have had UTI/Kidney infections and or always protein and blood in my urine sence I was a child, now 52 yrs old. I have IGA Kidney Disease, I would like to learn more on why? what I can do to help my chronic infection, as well as chronic infection throughout my body. I take Keflex 500 mgs daily, the others first choices I can't take, allergy to Sulfa's I also have over growth of yeast throughout my body..thanks Teri 52 Lupus w/ many Secondary conditions, Sjogren, Raynauds, COPD, oral, sinus, throat, stomach, cysts, lumps, Osty, with bone loss lost 4 inches, factures, I could go on and on, yes Lupus Fog..Teri

Brain fog

This is always a big struggle with me, as well. I have found it difficult to not lose confidence in my intelligence, as it is difficult to articulate my thoughts, and also difficult to read headier material like I used to. I have found, though, that food makes a huge difference with the fog...dairy, gluten and sugar especially trigger it. It seems to improve if I drink a lot of water and eat more raw food, but that may be just especially true in a hot city summer with no A/C! Have any of you found Plaquenil to relieve the fog? I am newly diagnosed, and haven't started my prescription yet. Thanks for the helpful article.

Lupus and UTI's

Is there any connection between Lupus and UTI's? I've had problems with them for about 40 yrs now, but in the past couple of years it's gotten much worse. I've had surgery implanting mesh to make sure the bladder is in the right position, but I still get them all the time; I even got one while I was still on a low-dose antibiotic! My gyn recommended probiotics, but they don't seem to help much, so I was wondering if it can be related to my Lupus(SLE) at all. I try to keep my rheumatologist aware of everything I have going on, but he's never indicated any kind of connection. Between that, muscle & joint pain, and the fog, I feel like I'm falling apart. Any ideas?

Dear Lisa, Thank you for

Dear Lisa,

Thank you for posting. I would love to speak with you about this. Is it possible for you to give me a call at 212-685-4118, ext 32?

Thanks!

Jessica

Lupus Fog

I have had a continued "Fog" for awhile now. I use all the tricks you have mentioned and have become very dependent on the calendar. I also have 4 small children in which takes all of my energy, but they are very supportive in helping me to remember certain daily things to do. My neurologists has had me do 4 sleeping tests and I am so very little in need of the CPAP machine but he is determined to confirm this is all I need. What are you thoughts on this? It is like he dosen't understand the Lupus Fog but even when I forget how to "make change for money" hey getting a little scary here. I would love to hear comments to this situation. I also notice that I am feeling even more depressed during this process any suggestions?

Lupus Brain Fog a.k.a. Cognitive Dysfunction.

Two weeks ago my 'fog' was getting quite thick. I was really worried about what was going to happen next ... and if this new symptom was going to be permanent. I have since then started taking a lot more vitamins, including - and believe most important - Omega 3. I haven't found myself being totally lost in the confusion since. Hope this helps someone! :)

B12 injections with Brain Fog

Have you ever had a "flare" after an injection? A long time ago I tried a B12 injection and went into a flare.

lupus fog

All of the tips are terrific. I also find that my "fog" is worse when my B12 levels are low. Regular B12 shots help me tremendously!